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also_ran
03-20-2009, 05:20 PM
Hi, I've had SLE for 15 yrs but the last couple of years have gotten worse. It is now affecting my brain/central nervous system leaving me paralyzed on the left side, bouts of blindness and of course the ever present pain. More recently I was also diagnosed with a severe case of gastroparesis. As many of you know when we are combating several issues at once there is no way to be reliable in the workplace. I have a friend who lets me work part-time at her store under the table so it doesn't affect my SSI but lately those days are few and far between. I am also in college full-time so I do not think I could handle a job and school at the rate I'm going. Most days I can barely handle getting out of bed. So my problem is, of course, how do I afford to live? I get $647 a month from SSI and after I pay rent and other bills I have less than $200 left for the rest of the month. I then have to factor in gas money for numerous doctor appointments (my rheumatologist is across the state!) all over...also several prescribed medicines that weren't covered by insurance so I buy them otc and of course, food, which I have to by daily because I never know what won't make me sick day to day. And it is a very limited diet. It gets very expensive. I tried turning to DHS to get food stamps but they only granted me $14 a month! That will only cover one pack of protein shakes I have to drink! I tried arguing my case with them but they said all my medical "expenses" did not count towards my living expenses...I'm really at a lost. I was wondering if anyone knew of somewhere else I could turn to help. I would really like to live independently but there is no way to even make ends meet even by pinching every penny.

BonusMom
03-20-2009, 09:01 PM
Perhaps your doctor will prescribe liquid nutrition that your health coverage will cover? Other than that, food banks?

Wish I could be of more help...............

sick n tired
03-20-2009, 11:35 PM
I am in the same boat only I have not been able to get ssi yet...we are selling the house to pay medical bills...Food banks are not a bad idea for the food other than the shakes...why are you on so much of the protein shakes, anyway? Are you having a problem getting protein or is it being leached our of your system?

Faith
03-21-2009, 12:01 AM
Also_Ran,

As far as meds, have you tried getting patient assistance through the pharmaceutical companies? This can be located on rxhope.com nad needymeds.org (com?). I can't remember which is which as one is com and the other is org. That's one suggestion. I have had to do it as I work only part-time and my husband was laid off after 19 yeears of continuous employment due to the economy. I simply can't afford it and I struggle to work 3.5 hours per day and come home to nap the rest of the day away.

Food banks would be another good idea as is Catholic Charities.

SNT,

I am sorry to hear you are selling your home to pay medical bills. It's very scarry!! We took out a 2nd to pay off high interest credit card that paid for groceries, medical bills and 30 plus meedications I am on per month prior to my husband being laid off. I have applied for disability, denied twice and now requesting a hearing.

It's frustrating how the average citizen can be denied everything while we have worked our entire life. :no:We are paying $1200 per month to Cobra and just found out Unemployment is only 6 months (14.7% unemployment in our county) due to so many people filing. Ironically, my husband has always worked and never had to file. The time we need it the most; it's very limited. :hissyfit:

Maybe we should all write our representative and ask for a bailout to pay off our house and medical bills since so millions are being handed out for AIG bonuses. lol. After all, we are paying for it right?

I am praying for you SNT. I hope you are able to sell your home.

God Bless,

Faith

Danica01
04-03-2009, 10:56 PM
I have been laying in bed every night trying to come up with a plan to make everything in life work. I don't have enough money to pay bills and half of the time I live on peanut butter and jelly.......what a wonderful, nutritional meal! I am in the process of applying for Social Security/Disability. My insurance costs $500 dollars a month and Tim is out working hard for the two of us. I feel so guilty because he pays for my insurance,food and even medicine. I am worried he will resent me later. I just don't know what to do! When you are applying for SSD they don't want you working and if you do, there is a maximum amount of hours you can work. So, during the process what are you supposed to do, lose everything, go bankrupt, sell off your belongings (which I have done)? Why is life so hard and why can't we get the help we actually need? I just don't understand life anymore.

Rastagirl
04-03-2009, 11:38 PM
Oh Danica...my heart aches for you...and each person on this thread that is going through this. It's not fair. I know there's nothing 'fair' about life, but come on, is it too much to ask for a little decency for people? For Social Security to stop jerking people around that are truly disabled with a real disease? I am just sick of it!!

I watched my Aunt go through this 5 years ago. She worked really hard all of her life, finally had her dream...her own Florist shop and she was so good at it. One morning, out of the blue, she woke up and could not move a muscle. She couldn't talk, or get up or even lift an arm. After a hospital admit and tons of testing...they finally decided it was Lupus. (Prior to this, I was the only one in the family with Lupus.)

So she slowly lost her Flower shop, and by the time she went through 3 appeals to Social Security for disability, she had lost almost everything she had ever worked for. They drug her on until she had nothing left but her house, and she was extremely close to losing that too. The Bank was the only one in all of this that didn't ruin her life. When she finally got an attorney to fight with Social Security, she won her case....after 4 years! By that time, she was beaten down with the disease and worst of all the horrible stress they put her through. It was so awful.

So what happens, she finally got her lumpsum check of benefits and was so happy...she spent some money paying all her bills, bought a few things for her house and took one vacation with her daughter to Hawaii...only because my Mom (her sister) urged her to do this for herself. Now here's the part that breaks my heart to pieces....6 months after all this, she got a really bad staph infection that went to her heart and she had a massive heart attack and died, very unexpectedly, the day before Christmas in 2007. It happened so fast, I never got to even make it to the hospital. God, it breaks my heart.

I apologize for sharing this here, when all of you are struggling yourselves...I know it isn't what you need to hear for your situations, but I am just so damn mad at the system and what they are doing to decent people. Our Government has a system that is horribly flawed and it makes me very angry...maybe it's time for us people to do something about it. To stand up and say ENOUGH! This system doesn't work and it needs to be overhauled. Problem is...we're sick and we've barely enough energy for ourselves, let alone taking on a fight with the Government, and I think they know that and that's why they're still getting away with it.

Okay....I'm climbing down off my soapbox now :soapbox1: and trying to bring my heart rate down....

Sorry, guys....

Hugs,

Lori :heart:

Faith
04-13-2009, 10:17 PM
Lori,

I am so sorry!!! That is just awful!!! I am sorry to hear about your Aunt. I think you said it all for all of us.

I think some of our meds could be paid for if our representatives weren't flying out of the country more especially in this economy. It seems we are having to struggle and cut back; but apparently our representatives are still taking out of country trips. I live on a lot of pj&b sandwiches, crackers, etc. I am sorry to hear that I am not alone. :no:

Maybe we need to all write our frustrations down to our reps. I am definately voting everyone out in our district for a change.

Take care,

Faith

Rastagirl
04-13-2009, 10:37 PM
Thanks for your kind words, Faith. I miss my Aunt very much. Still hurts terribly. I had a hard time when this Christmas rolled around. She loved Christmas. She was the one that planned everything and got everyone together at her house. Christmas was very different this year....don't think it'll ever be quite the same.

I appreciate your thoughtfulness......

Fondly,

Lori :heart:

leaann
08-17-2009, 05:53 PM
hello everyone,

I see I am not the only one is this boat... My husband lost his job last aug with the government he had been there years... then in Feb I lost mine I had been there only three years but it was given us insurance when my husbands stopped. Now we have no insurance... disability was denied. had to file an appeal... We just bought our house 4 years ago and every month we pray they don't foreclose on us. Heck I was just glad to know that we got the light bill paid this month. It was 300.00. They just did a increase like it wasn't hight enough as it was...

I am having to hold off going to the dr at this time due to no insurance and the meds I was taken some of them I had to stop... Hubby stopped all of his to get most of mine. I am so afraid that it will cause him problems as he has high blood pressure and diabetes and high clolestrol (sp). He tells me he is fine but I still worry.

As I read where someone stated that because of there diet it was expensive to buy food I can truely understand that. I am also on a limited diet and the things I can eat are very expensive...

I know that there are food banks out there to help people and some are good, I am leaning on going to the food stamp office just to see what they will tell me...

I will say that my husband is doing odd jobs to try to pay the bills but that is just not cutting it these days...

What are people suspose to do when there is no help.... we can't just lay down and die, there has to be releife out there somewhere...

I am still looking for answers... hope that we all find the help that we need... good luck...

Faith
08-17-2009, 11:18 PM
Hi Leann,

Food banks and the salvation army help with food. Check with Catholic Charities for help. Also, check with your local gas and electric company and see if you qualify for CARE or FERA which is a program set up for unemployed or low income families. Many electric companies have forms online that you can use to apply. You need to ask!!

If you have Lupus, you have special heating/air conditioning needs you may be eligible for a "medical" special discount on additional kwh at a lower rate. You will need to check with your electric company and get your doctor to sign the Medical form. It is good for two years. You will need to remember to renew so I make a copy of it and put it in a binder with the last date signed.

Check out needymeds.org and then check out either "Generic" or "Brand." You can look up your med, download the form and print it out. Complete it, attach all the financial information and take it to your dr's office explaining that you cannot afford your meds and if they could please complete the rest and fax it for you. Keep copies of all the forms even if you scan them into your computer. Follow up in two weeks and they should be able to give you a status update.

Most meds are mailed to the dr's office and they will call you or you may have to call them and follow-up. You are going to have to stay on top of it. Log in the dates you received the meds as they are shipped every three months. Another option is RXoutreach as they will give a discount for 90 or 160 days which is very reasonable.

Check on the internet for non-profit grant companies. Patient Services, Inc., Partnership for Prescription Assitance, Patient Access Network, Co-Pay Relief program, Caring Voice Aoalition, Inc., Chronic Disease Fund, and Healthwell Foundation. Some of the programs will fund co-pays or reimbursement for insurance premiums/COBRA. Remeber you can extend your COBRA for 9 months and the rates are cut to 1/3. Some of these companies will reimburse for insurance premiums. Check with your local state.gov as they offer high risk medical insurance for patients that have pre-existing conditions.

I hope this helps. Keep up the fight and don't stop fighting.

Take care & God Bless,

Faith

pbrandie
05-07-2010, 08:20 AM
I live in Oregon. Are Food help is Oregon Food stamps. They go by your income and bills. The rate of money for food is adjusted when you pay for anything prescribed out of pocket and send in Rx and reciepit. I recieve 106.00 a month not much but anything helps. But I had 300$ worth of stuff last month NOT covered by medicare. I phto copied sent bills and have 200.00 for food next month. Look up you state goverment page and see what assistance is available. My place of assiantance is called Senior and DIsabled services.

cjones87
07-26-2010, 01:40 PM
Lupus has completly taken over my life. My before my diagnosis I was a college student with a job and my own place. Now I have none of those. I tried going to school but I get sick too often and I eventually have to drop out of my classes. I had to stop working and give up my apartment. Now I'm living at home with my mother. I had to lie to get on welfare. I applied for Social Security in March of 2008 and they denied me. I have appealed my case time and time again but they still refuse. Money is extremely tight and with summer here it only makes things worse. I live in Palmdale, Ca and the temperatures could get into the 120's. Not only does the cold but the extreme heat brings more flares than I can handle. Unfortunately electricity is so expensive out here that I only turn on at night after 7. The bills are too high and I'm running out of hope. I've been thinking about doing my best to ignore my pain and go to work but it's just that the pain is so bad I can barely move sometimes but like I said earlier bills need to be paid and Social Security is being stubborn. I just don't know what to do anymore. I honestly feel like giving up at this point.